Inequitable Access to Healthcare

Despite the election of a president who is more astute in relation to the HIV/AIDS epidemic in his own country of South Africa than his predecessor, global funding to make medicines to treat an HIV infection widely available, and a network of community health clinics and NGOs working to distribute information about prevention and treatment of HIV/AIDS, 1400 people daily become newly infected with HIV in South Africa. These account for nearly 20% of the estimated 7,400 new infections occurring daily worldwide. Likewise, the actual number of deaths related to HIV holds steady at about 1000 a day in South Africa, again accounting for about 20% of the 5,500 people dying daily worldwide from complications arising from an infection.

Although South Africa is among the most severely affected countries in the world by this pandemic, only about a third of those testing positive in South Africa are accessing the antiretroviral therapies (ARVs) that can prevent the virus from multiplying, thereby restoring the immune system to healthy levels. The reasons for this are complicated, as 30/30 is attempting to document. In addition to the social and structural complexities that have been mentioned in this collection of essays, there are a host of complications around access to healthcare in South Africa. During apartheid, for example, the government focused on the development of providing primary care to the public through a nationwide system of hospitals, leaving the masses living in townships with little access to a network of quality care. Under the new government, community health care centers like Inzame Zabantu are being built and are increasingly providing access to primary care in impoverished communities, but the patient load at these clinics is astoundingly high, and clinics are still inaccessible to tens of thousands of people. Government grants are making it possible for people to access ARVs, but the odds are still stacked against the poor. Drugs are accessible to those who do come forward to test, who live near a community health center, who test positive, who return to take a second test to find their CD4 counts, whose CD4 counts measure less than 200, who navigate the application for a government grant, who wait for a decision in relation to their application, and who qualify for assistance. Moreover, the effectiveness of treatment relies on consistency and good nutrition. The drugs are not effective if taken on an empty stomach. Since most people on the drugs are living on about $1.75 a day, hunger remains a serious issue. Finally, despite the work of NGOs to blanket the community with information about HIV/AIDS, even in the post-Mbeki situation, the stigmatizing effects of an HIV-positive diagnosis continue to prevent people from seeking medical attention.

To add yet another layer of complexity to this difficult situation, information about the virus is received tentatively by a culture that is torn between African tradition and European ways. The denialism of Thabo Mbeki only fueled an already latent distrust of Western medicine in many African minds. Rumors of the virus coming in the needles of the “white man,” promises of herbal cures by medicine men, and traditional ritual treatments continue to compete for the allegiance of those struggling to survive in communities where the unemployment rate often hovers around 70%. Medical aid workers widely note that, despite testimonies of people “coming back to life” once on ARV treatments, there is a continuing resistance, especially among men, to seek treatment and live.

These realities and their attending statistics are inherently alarming. In trying to process them himself, Jonny Steinberg, a South African journalist, attempted to understand the situation to a greater extent than the newspapers and academic papers were able to provide. For eighteen months, he periodically visited a village in the Eastern Cape Province of South Africa in an effort to understand the choices of a man he calls Sizwe Magadla. Despite a high risk of having been infected, when Steinberg met him, Sizwe adamantly refused to test for HIV. The result of Steinberg’s investigation is published in a masterwork of literary journalism entitled Siswe’s Test: A Young Man’s Journey through Africa’s AIDS Epidemic. In it, Steinberg explores with tremendous insight what is often at stake for men in still traditional villages as they confront this modern-day disaster, navigating his way through the “architecture of shame” that surrounds the illness, the struggle to lift oneself out of poverty and the reality of envy which threatens to pull the successful back in, and the constant push and pull of cultures as traditional African beliefs and practices encounter, accommodate, and resist European beliefs and practices. Indeed, it is Steinberg’s navigation of these competing beliefs, and what is at stake in concession, that is pertinent here, for they point to a terrible albeit unforeseen complication that is the legacy of colonization in Africa and apartheid law in South Africa: the understandable even if catastrophic mistrust of white “man” and “his” needles.

Steinberg recounts a telling conversation he had with Sizwe, who shares with him a “black people’s secret”: ‘Some people believe that the whites have developed a cure for AIDS,” Sizwe told Steinberg, ‘but that they are holding it back. They are waiting for enough black people to die so that when we all vote in an election the whites will win and F. W. de Klerk will be the president again’ (138). Sizwe’s own distrust of the medicine of white men was corroborated by Kate MaMarrandi, a community health-care worker also interviewed by Steinberg in the Eastern Cape. She told Steinberg,

‘In 2003, Dr. Hermann came. He started to tell us he has got help—ARVs. Nobody believed him. Some said this one has come to kill the people. Even the doctors didn’t believe him. People thought he had come to destroy the people with his needle and his blood test. They believed AIDS was caused by politics, by white people.’

Steinberg reflects on these disclosures, writing, “For all our talk on the causes of AIDS, it had taken this trip . . . to out [Sizwe’s] strongest suspicion about the origin of the epidemic. It was brewed, not by witches and their demons, but in the vividly imagined laboratories of Western science” (146). Steinberg’s book goes on to try to understand this mistrust of Western medicine. First, he turns to tales of the ordeals experienced by Dr. Hermann Reuter, the doctor for the MSF (Medicines Sans Frontieres / Doctors Without Borders) who set up a clinic to bring ARVs to Lusikisiki, the region of the Eastern Cape where Steinberg’s story about Sizwe unfolds. He was told,

‘When [Hermann] arrived, there was a big crowd outside the clinic. Many were not sick; they had come to see Hermann. They said they had heard that here is a doctor who has come to inject AIDS into people. They came to see what he looks like. When he came out, they all stared at him, but no one said anything.’ . . . . During his early days in Lusikisiki, he had on two occasions arrived to packed clinic waiting rooms; some of the people assembled there had not come to be tested but to ask him to explain what was in his needle. He had had to stand in front of his audience and convince them that he had not come there to kill them (147-148).

Ultimately, Hermann won the trust of many of Lusikisiki’s residents by treating patients with ARVS, which rapidly put life back into those whose immune systems were shutting down, and by offering scientific explanations for what was happening in the bodies of his patients in an attempt to override any association of the onset of illness with the needle that pierced the skin to draw blood. Hermann also allowed his own blood to be drawn publicly, in order to dispel fear (156).

The fears in the community about which Steinberg writes are fears to which I, too, have been witness in my work in relation to HIV/AIDS—both in Minneapolis, and in South Africa. In 2008, I attended a service-learning conference sponsored by the National Youth Leadership Council in Minneapolis. A luncheon discussion featured the work of Dr. James Hildreth, the Director of Meharry Medical College Center for AIDS Health Disparities Research and Professor in the Department of Internal Medicine, who was sharing advances in scientific understanding of how the virus was transmitted, and of how it might be stopped pharmacologically. I sat at a table where the pre-lecture discussion ultimately turned to the origin of HIV/AIDS, and several attendees at my table disclosed how they very much believed HIV was concocted in a laboratory in the bowels of the CIA. When asked about this during the Q&A after his talk, Dr. Hildreth, having credibility in the African American community, said in no uncertain terms that HIV predates the technology that would have been required to develop such a virus as HIV—and that this is indeed a vicious rumor that must be stopped for the health of the disproportionately high number of people in the African American community now testing positive for the virus. It is a rumor that persists, nonetheless, both in America and in Africa. This became evident to me again in 2009. While facilitating a refresher course in systematic theology for pastors working in the townships outside of Cape Town, South Africa, we welcomed a guest from the ministry of health. She quite openly admitted that she believed that “white men” had devised HIV in order to bring harm to Africans.

Although it is easy to dismiss the persistence of the rumors about HIV coming with malicious intent from the laboratories of Western science as superstitious and ignorant, it is important to acknowledge episodes in history that contribute to the perpetuation of such “dis-ease.” In South Africa, such episodes are not in the historical annals that students study as some remote lesson from the past, illustrated by pictures of murky liquids percolating in glass flasks and printed on glossy textbook pages in sepia tone, but rather these are stories that occupy the modern-day press. Wouter Basson was on trial in 1999 for allegedly developing biological weapons, including pathogens, for the apartheid government. Although amnesty and an acquittal prevented his arrest, he was also widely believed to have provided lethal toxins to be used against African National Congress (ANC) activists whose resistance the apartheid government so feared. He continues to face legal proceedings for crimes against humanity.

Of course, South Africa is not alone in its history of mistreatment of people with dark skin pigmentation. The Tuskegee syphilis experiment is perhaps the most infamous example in the United States, when researchers, between 1932 and 1972, undertook to study the progression of syphilis in people of African descent. Penicillin had become the standard treatment for syphilis by 1947, but in order to continue their observations, the scientists for the U.S. Public Health Service prevented nearly 400 African American subjects from gaining access to the drug that could have treated their illness. In addition to this notorious example, Harriet Washington has provided many other episodes in her book, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Among them are these:

In 1945, Ebb Cade, an African American trucker being treated for injuries received in an accident in Tennessee, was surreptitiously placed without his consent into a radiation experiment sponsored by the U.S. Atomic Energy Commission. Black Floridians were deliberately exposed to swarms of mosquitoes carrying yellow fever and other diseases in experiments conducted by the Army and the CIA in the early 1950s. Throughout the 1950s and ’60s, black inmates at Philadelphia’s Holmesburg Prison were used as research subjects by a University of Pennsylvania dermatologist testing pharmaceuticals and personal hygiene products; some of these subjects report pain and disfiguration even now. During the 1960s and ’70s, black boys were subjected to sometimes paralyzing neurosurgery by a University of Mississippi researcher who believed brain pathology to be the root of the children’s supposed hyperactive behavior. In the 1990s, African American youths in New York were injected with Fenfluramine—half of the deadly, discontinued weight loss drug Fen-Phen—by Columbia researchers investigating a hypothesis about the genetic origins of violence (Nelson).

In the long and winding path that has been the history of public response to HIV/AIDS, both in South Africa and globally, the world community faces another fork in the road. In one direction, there is death. In his recent presentation to South Africa’s parliament, the health minister spoke of his fear that the population of South Africa would soon begin to decrease as the numbers of deaths in his country threaten to surpass the rate at which South African babies are born (Kgosana). In the other direction, there is life. The situation truly is this stark. The reversal of the trend toward a decreasing population largely attributable to HIV/AIDS depends on a successful campaign to make drugs accessible to the two-thirds of the positive population still going without treatment. The issues that attend access to these life-saving and life-prolonging medications, as this essay has shown, are complicated to be sure, for in this multiply wounded society there are reservoirs of resistance that betray the naïveté of even the most benevolent attempts to provide treatment. According to projections through 2012, the lives of 1.2 million people in South Africa hang in the balance, dependent upon the rate at which the government is able to scale up access to ARV treatment (Walensky, et. al.).

Such a campaign in the direction of life is going to require the unified effort of government, academic, and religious sectors to shift the paradigm in which response to HIV/AIDS is conceived and conducted. This shifting of paradigm is a service to which 30/30 attempts to contribute, such that the direction we take at this critical juncture, rather than in favor of death, celebrates life.

Beauty’s Vineyard

Originally, ten scholarly essays were published on this blog. These essays discussed how Christian theology can positively inform response to HIV/AIDS, as informed by theological aesthetics. In short, they were crafting a socially engaged theology of Beauty. Those essays have now been greatly expanded and published under the title, Beauty's Vineyard: A Theological Aesthetic of Anguish and Anticipation (Collegeville: The Liturgical Press, 2016).